Feeling Blue

On Monday, January 14 at 11am, Sebastian went in for Gtube surgery. Ali put on the blue smock and matching net hat and carried him back to the room where he’d be put under general anesthetic. Curious George accompanied them. I know what it is like watching your child ‘go under’, I’ve done it a few times before. I was thankful Ali took Seb back this time, I was just too emotional. And Seb needed me strong.

How did we get here?

When Sebastian was a newborn, he came home from the hospital with an (nasogastric tubes) because he wasn’t nursing; finishing a bottle was a challenge; and he had severe reflux. I was feeding him, then pumping for his next meal after I got him back to sleep. In the early days I had a hand pump and it was a timely affair. I read the ‘What to Expect the First Year,’ skipping through to topics such as colic and sleep. Skipping over milestone bits at the beginning of each chapter.

In those early morning hours after he had just gone back to sleep, and I was pumping, I researched NGtubes on the Internet. I stumbled upon photos and stories of children with Gtubes (gastronomy tubes). They scared me. So much. I was determined that this would not be my son. I would make sure he never needed a tube inserted into his stomach for eating. I couldn’t even fathom it.

Sebastian took his ngtube out about two weeks after he came home AND finished his bottle that night. Huge triumph. We didn’t put the tube back in. He decided to nurse at 4 months, just before we moved to Cairo. At 5 months he stopped taking a bottle and continued to nurse until he was 2 years, 8 months. Something I am both very thankful and proud about. Despite his rough start, he was a chubby baby.

After Seb stopped nursing, he kept growing in length, but his weight did not keep up. For the past 2 years we’ve been followed by a nutritionist and dietician. Gtube surgery has come up and I’ve always fought it. His weight was comparable to other kids with CP, right? It wasn’t until we had Tallula that I started seeing such a huge discrepancy in his weight gain. Well, that’s not entirely true.

This past year has been very stressful. I know he’s smaller and lighter than he should be. I do a lot to add calories. And he loves to eat. But the energy he uses to eat is not replenished by what he eats, not to mention the energy he uses to play and walk in his walker, which he’s doing every day. When Seb gets sick he quickly loses weight due to loss in appetite. Getting that weight back can take months. It’s been a vicious, stressful cycle.

The inner battle ended just after we returned from our trip to London. While we were there, Sebastian had trouble eating. He was tired and not eating enough made him more tired. When we returned, we decided that Sebastian would have the Gtube surgery. He needed the Gtube surgery. I was heartbroken. Heart. Broken. We both knew we had to do what was best for Sebastian, as difficult as it was. I had been working towards acceptance for months. It’s difficult to think about adding ‘one more thing’ (joining another FB group!) to the current list.

There was a lot I was worried about. I discussed it endlessly on CP forums, etc. I did the research. How would it affect his reflux? His sleep? His mobility? His diet? Would it work? Would it change our lives? For the better?

Stay tuned for the surgery, the recovery and the journey so far…

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12 thoughts on “Feeling Blue”

Oh kara xxx sending you much love xx I understand that fear and can relate to the sloooow weight gain even though eating lots x I hope seb continues to enjoy his food and the tube can allow a bit of extra fattening to occur xx fwiw pep outweighs coop by 2kilos x

I know you have a lot to think about at the moment but I thought I’d mention giving Seb a blended diet through his tube, this is how I feed my daughter and it’s really allowed me to feed her the nutritious food she needs and that I always wanted to feed her. There’s lots of help and information available if you are interested. Wishing Seb a speedy recovery from the surgery xoxo

We had to make this decision for John in August last year after months of chest infections and seizures. I was devastated he had been tube free for a whole year. But I can honestly say it has made life for all of us much easier and happier, John is healthy and still enjoys his food (just more of the fun naughty stuff like chocolate). From dead against tubes of any sort I am now the mum who thinks why didn’t we do this earlier and seeing my friends struggle with their kids feeding going through all the stress of weight loss and I wish they could see how easy it is on the other side.John has been 5 months without a chest infection and breezed through several vomiting bugs thanks to the gtube. Hope Seb is healing well and his new tube brings less stress and more chubbiness. xx

Kara,
I can’t stop focusing on how long you breasted him. That is GINORMOUS and you SHOULD be so proud!!! I know how difficult this must have been for you. I think we are alike in several ways – and fear of the Gtube is one of them. I don’t need to tell you that you did the right thing, it will all work out, you’ll get used to the new routine….because really, what do I know? And you don’t need to hear those things from me. So instead, I’ll remind you that you’re a very strong Mom. And I’m always amazed at what you do and how much you accomplish with both of your beautiful children. I will be following along on this G-tube journey. And I have a feeling it’s going to be a very positive, very inspiring one. Soon you’ll be helping other Moms who are frozen in fear.

Kara,
I continue to be awed by your strength and all your efforts for Seb. For example, how you nursed him while I was only able to do that for my preemie son for two solid months. It is heartbreaking to put someone so young and frail through surgery, but you’ve done your research and your faith will carry you and your family through this, recognizing the benefits that lie ahead.
Tonette

kara i know you have heard it before and generic as it may seem i cant help but hear the words ” God only gives you what you can handle” and you seem to be a chosen one that has decided to deal with your difficult yet beautiful life wonderfully. i know it must tear at your heart to compare the growth and progress of your two children. thankfully, you have the same love for both-and in the end your love is the greatest gift. my thoughts and prayers and love are with you at this time.

Would still love to set up that FaceTime. So many things to say… Love you and praying for good results. Just remember – it takes time to adjust to the liquid; it takes time to adjust to the discomfort; it takes time to get it all “down” ; it takes time to gain weight. It all just ‘takes time’. Thinking of you all.

Hugs. It is such a hard decision to make especially because you have worked so hard to feed him and keep him healthy. This can just be another route where you can sneak in some extra calories while he still continues to eat by mouth too. You have not failed him at all he just can’t keep up with eating all that he needs.